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Many have asked how Brennan and I are doing with all of this. I guess you could say that our emotions vary depending on the hour.

Some moments we feel strong and hopeful that God will help our Victoria be victorious. Other moments we start to fear the worst (which is also the medically proven outcome) instead of trusting the Lord. Then we refocus as best as we can.

Today has been a little more emotional for me at times for whatever reason. I look into her beautiful eyes and I just cannot imagine not being able to look into them for the rest of my life. I want to watch her grow and learn, to make friends and learn about Jesus. I want her to experience the simple and extravagant joys of life. I want her to travel the world with us and explore.

Brennan and I were talking about her today through texts and both had the same thoughts today: we know that God has some purpose for all of this, and while we desperately pray that He wants to do a miracle in her life that would impact the world and also save her life, if that isn’t His plan, we pray that somehow she can be the catalyst for a breakthrough in the research for this disease – one that would create a cure and save thousands of babies/children. Obviously, we want to keep her here with us, no question about that 😄 and we are doing everything we can to make that happen.

We know that her life has a purpose, and we know that someday we will understand. But, for now, we continue to trust the Lord, minute by minute, and pray that He will heal and restore her.

On a lighter note, we are almost to Pittsburgh on the train. Tori has slept well most of the trip thus far, and this is a really great way to travel.

Tomorrow she will have an MRI and many other tests. Thursday is a day to explore, and they are giving us passes to two museums. Friday will be more meetings and appointments. We are looking forward to meeting Dr. Escolar and her team and seeing what options there might be to ease her pain and perhaps stop the progression of the disease.

A friend told us that she dreamt about Tori at the doctor last night, and in the dream Tori smiled. Praying that this is the beginning of our miracle and that our baby will smile again.

Praying with you for healing.
But I read your comment about sometimes fearing the worst instead of trusting in the Lord, and wanted to say… trusting in Him doesn’t mean you have to 100% believe there will be healing on earth. Many people have great faith and don’t receive the miracle they pray for, and it doesn’t mean their faith was lacking. I know you probably didn’t mean it quite like that, but I hurt for people who do and then don’t get the miracle and have the added pain of feeling like your faith wasn’t enough.
I have struggled with that in a few big things.
Real faith is knowing that God will be with you through it all, and that good can come from it, that your story can be used for Him. Either way he heals her, her or there.

Reblogged this on Nuggets of Gold and commented:
Please continue to send your thoughts and prayers for this beautiful baby and her family as they travel the unknown path of a serious disease. Thank you!

I just can;t help looking at your beautiful pictures of her and feeling all that love you have for her. My heart aches for you, and my girls and I pray every day that God will give you that miracle you (and we) so desperately want for Tori. I am so thankful that whatever His decision, her little body in heaven will be perfect! I am sending you something tomorrow (and truth be told, I feel like a kid at Christmas!) I can’t wait for you to get it!

Love your updates and those beautiful eyes…I dreamed of Tori last night too, except I was babysitting and could not find her formula anywhere so I had to call you and of course you reminded me that “she uses breast milk, silly”- also thanking God with you that you live so close to an expert on Krabbes. Keep singing, Lesa.

Praying for a miracle… Everyone comments on how beautiful Tori’s eyes are,and they are truly captivating. I have also noticed how much they actually look like your beautiful eyes !
We have always heard the expression, “your eyes are the window to your soul”. I can tell you that what I see is the Godliness you both reflect… Your deep faith and willingness to share your lives with so many people at such a difficult time is such a testimony to your surrender to the will of God. I just know you have brought many people to the banquet of our Lord through your example. I feel blessed to be on this journey with you. Thank you so much……

Dear Lord keep this family in your loving arms,,,,lay your healing hands on Tori, keep them
safe and know that we love you and yes Tori does have your eyes…..So with that said, I
Love you all so much. God Bless!!!

We are so blessed to be in a country that the best medical teams are only a train ride away.. My hope for all little ones is that- this is the time and place for the answers to a cure are found. Many of us are on that train with your family, in thought and prayer.